ER+/PR-/HER2- Anyone know anything about PR-?

mbk

Great question Barbara

Great answer Otter .... now can you explain HR2 postive vs negative

thanks

Mary

janjoy

What an education I'm getting thanks to you ladies!  I'm 59 & just had lumpectomy w/ 5 sentinal nodes removed. Diagnosed with Stage 1, Grade 2, no nodes, IDC & ILC, 1.4 cm, ER+ (90%), PR- (0%), HER2-.  I have not yet received oncotype dx results.  Will start rads in 3 weeks.  Wondering about chemo.  From research so far, it looks like I may be borderline if chemo would be worth side effects.  I want to do everything I can to eradicate any microscopic cancer cells, especially if there is a correlation to PR- and bone cancer later on.  Have any of you with Stage 1 similar to mine had chemo?  I assume I'll be on Tamaxifin or Amaridex.  Thank you all so much for your great information. It sure helps to know others with similar diagnosis.  Jan

LuvRVing

I did not do chemo.  My ER was barely positive, but the potential side effects were not something I was willing to risk.  I am 60 and I have Type 2 Diabetes.  I had Mammosite rads and moved on to Femara. 

As much as we'd all like to think that chemo is the "be all end all" for breast cancer, it is not.  And there is no "guarantee" that chemo will prevent a recurrence. 

Michelle

BarbaraA

Well, I didn't do it, as my Oncotype score was 17. And I am not taking Arimidex. I am working with a nutrional biochemist to keep estrogen low and metabolizing properly and at the last test, I am doing great.

kira1234

janjoy, I was going to do chemo with an oncotype score of 24, but after the first treatment all my Dr's agreed the SE,s for me were to extreme so no more chemo. I was only goin to get a 3% improvement as it was. I plan to do Arimidex but if the SE's are bad may rethink it.

I am also going to what I can to keep my estrogen reduced through diet, weight loss, and exercise. Barbara, how did you find a nutritional biochemist?

Karen

BarbaraA

I consult with Dr Joe Veltmann of the Institute for Individualized Medicine. He did a genomic assy test and analyzed the SNP's on various genomes. Based on those results. he came up with a diet plan as well as supplements that will help the genes that are not working to their full potential as well as to help the genes that metabloze estrogen to metabolize it properly. 

ruthbru

Wait for the oncotype dx results; they will give you a clearer direction of what you should do next.

pebee

Bump

I am ER+ PR- and HER2-.  There seems to be some conflicting information.  Does anyone know the long term recurrance and survival rate for this subtype?

pebee

bump - anyone know anything........??????

otter

Sorry for not responding, pebee.  I don't know anything more than what I said in a post earlier in this thread.  (Sorry about that, too.)

otter

pebee

Thank you - it seems like there is not alot of information on this topic - as in ER+PR+ is good - ER+PR- does not have the same prognosis.... But, there is not alot of information out there on the topic.

I tried looking for clinical studies - and saw nothing.... 

ruthbru

My understanding is that they don't really know the roll of progesterone. It's the estrogen factor that is the 'biggy' and that gives us more and better treatment options.

mks16

Peebee, this is one of the very few studies I was able to find. Its few years old, but it does give a nice table overview:

http://www.asco.org/ascov2/Meetings/Abstracts?&vmview=abst_detail_view&confID=52&abstractID=40116 

Sorry, had to edit link as it wasn't working. You'll have to copy/paste into the URL address bar to get directly to the study abstract.

mks16

Source:

http://www.asco.org/ascov2/Meetings/Abstracts?&vmview=abst_detail_view&confID=52&abstractID=40116  

whynotme

I am not sure I fully understood him, but my oncologist said something about how whether PR- makes a difference depends on where (on the gene, maybe, or the protein?) the "defect" was and that if it was "after" where it would help the ER receptors, it wouldn't matter, but if it was before, it would. But that in any event, they don't test for the location and no one really understands its role, and that I would get the same treatment as if it were PR+--that is, they treat it the same as ER+/PR+.  Interestingly, though, he said the recurrence rates for ER+/PR- were significantly less with AIs compared to tamoxifen (whereas they were only slightly better for ER+/PR+).  

I wish I had written it down, because now I am not sure I am saying it right, though it made sense at the time.

pebee

I have heard that tamoxifen does not work as well with PR- , I know that my onc wants me on an AI ASAP.....

ruthbru

Interesting. Thank you!

Allenan

Hi Everyone,

I am ER+/PR-/HER2- also and am having my re-excision tomorrow.  Just wanted to say hi as I have posted on the Stage 1 board as well.  I hope I can contribute to some of you ladies with similar experience. 

The waiting for the Oncotype DX is unerving to say the least.  I keep looking at my path report because it indicates IDC and DCIS living side by side.  The DCIS  is of the solid, cribiform and micopapillary types with intermediate nuclear grade and minimal necrosis.   The DCIS is seen with the IDC and away from it.

This is the part of my path that really worries me.  I have questions about the meaning of it.  Hopefully one of you ladies can shed some light.  I will try to get my BS to explain to me before surgery tomorrow as well.

klucyg

Allenan - hope your surgery went well.  I'm also +/-/-.  My Oncotype DX is 30 - so I'm having chemo.  I finished partial breast radiation with the SAVI catheter on Tuesday and had my port for chemo inserted yesterday and my first chemo treatment on 6/14.

ruthbru

bump

lanagraves

bump

Here's hoping someone can point me to more information. I am trying to make the best possible treatment decisions and I'm considering an ooph so that I can be put on an AI instead of Tamoxifen. From what I understand, the AIs work better for PR- than Tamoxifen. However, because my PR is 5%, my MO considers it positive. In other places, I see that 5% is still considered negative. I'm confused.

lanagraves

Barbara: Your onc sounds like mine. He is so hung up on "standard of care". He refuses to try anything not in the standard guidelines. Drives me crazy.

OtherSideoftheTunnel

I have consulted long distance with Dr. Veltmann for 5 years now. I've never met the doc in person, but I'm a big believer of his genomic testing, because the results are scientifically provable, rather than just trusting whatever protocol the oncologist has to follow to cover his legal liability. Luckily, I have an oncologist that actually knows something about nutrition and works with Dr. Veltmann's recommendations on meds, based on my individualized genomic profile. When seeing the actual evidence that I could not adequately metabolize AIs, oncologist was supportive of my decision not to switch from tamoxifen at the 2 or 3 year mark. When confronted with the fact that I have a gene SNP that prevents me from absorbing normal amounts of D3, he enthusiastically encouraged me to take 4x the "normal" dose so I could metabolize an adequate amount to prevent recurrance.

Once, when I fell off the supplements bus, the test results showed clearly that the bad estrogens were overtaking the good Es. When I straighten up and fly right, the testing shows clearly that the supplements are working and the good estrogens are beating out the bad ones.

Five years ago, I never thought I'd be healthy or happy again. Now, I can't believe how little my BC impacts my thinking or my life--where it used to pervade every waking moment (so I slept a lot, you can believe it!), I rarely think about it now.

I have 9 more days on tamoxifen, and then I'm DONE! With Dr. V's help, I don't fear recurrance. The scientific evidence based on genomic testing shows exactly what needs to be modified to keep the body in balance. The only question is, why isn't every cancer patient getting this excellent tool of individualized medicine to keep them healthy?

pebee

Bump- we have a newbie with this subtype